Our Promise To Nicholas - Help Cure Genetic Brain Disease
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Uploaded by fshrdan on Oct 20, 2009
Nicholas has Batten disease also called Neuronal Ceroid Lipofuscinosis (NCL), which is a brutal and debilitating disease that attacks all functions of the body. Children diagnosed with this disease are missing a gene that is responsible for eliminating the build up of intracellular waste in the brain and central nervous system. Over time the buildup of lipofucins causes these affected cells to die. The death of these cells is devastating to the brain and bodys function as it causes seizures, blindness, dementia, immobility, and death in all affected children. The cruelest aspect is that these children were born with all of these functions intact and experience a rapid loss of function after a period of normal childhood development. Most children will die between the ages of 8 and 12 in the Late Infantile form, which Nicholas has. Nicholas turned 6 in May 2009. Visit our Web site at www.ourpromisetonicholas.com and join our cause on Facebook.
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Over the past month or so, many of you have joined our cause on Face Book, invited your friends to join as well. You may have attended one of our fund raising events or have donated to our cause, if you did you Thanks! Here is an easy way for you to help us find a cure. We need you to share this video about Nicholas on your FB, your Twitter and any other way to help us get the word out! The more that know the closer we will be to keeping Our Promise to Nicholas
fshrdan 2 years ago